Immune/NK Issues - aka Pred Thread no 25!

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An introduction to this thread. It has been running for many years and has proved a saviour for so many of us who have suffered recurrent miscarriages as we go through this incredibly tough journey.

Discussions cover immune issues, NK (natural killer) cells, thyroid issues, PGS and many many more.

Welcome to the group no-one wants to be in 

Tagging people from the previous thread but please tag anyone else I've missed.

@KittyKatSmile @FrannyAnny82 @HoldingOn2Hope @Crystal2020 @Countrygirl220 @HarrietM87 @williteverhappen @Wishing5tar @hrtbrk2 @KtAgs @Gooe @peperethecat @zoe16 @williteverhappen @mezgaski @VenusStarr
@Ultra26 @ceebee21*@Luckyducky2 @weddinghelp1* @Hippo20

I think that is a symptom @HoldingOn2Hope. I’ve certainly had it before! Will be sending you all my good vibes on Friday.

@HarrietM87 that’s great to know. I feel like I never get any nuggets like that out of them when I go to the clinic despite me asking questions...I learn more here! X

Thank you @Countrygirl220 @HoldingOn2Hope and @Crystal2020 ☺️ it's amazing that finding a thread via Google can give me more info and comfort than my GP ever could! I hope you're all well. Sounds like you're all navigating this minefield daily and I'm really intrigued by Dr S' programme now. I guess I'm a bit confused about what to do next. I'm not sure why I'm on an nhs fertility clinic waiting list when that would largely be for those who need ivf as a next step. Not sure ivf is the answer to recurrent MC 🤔 unless there are genetic issues, although I could be wrong. I had the standard bloods done late last yr and everything was 'normal'. I haven't had the next tests yet (they've suggested karyotyping) so maybe I should keep hold of that referral. Who knows when I'll be able to see them - they have a huge waiting list. I called Prof Q's clinic and they aren't open but as soon as they are it seems I can call when I've ovulated and they'll book the womb biopsy in for me for a week after. It's £540 - totally willing to pay but like you said @HoldingOn2Hope I don't feel like time's on my side. I guess my main question for you guys is - have you all had something immuno related diagnosed that meant your next step was to see Dr S or Prof Q, or is seeing them a good step regardless because they're experts in the recurrent MC field? Sorry for all the qs - I'm feeling pretty confused about what to do next x

@Hazlet2 I didn’t have anything related to immuno diagnosed before seeing Dr S. After having 3 miscarriages I was referred to my local NHS recurrent miscarriage clinic which they told me would take 6 weeks. Well 6 months later I still didn’t have an appointment and decided to just book privately with Dr S (after lots of googling about what might have caused my miscarriages) and see where it took us. I was informed that the blood tests on the NHS were basic and if they came back ‘normal’ which I’m told they often do, then it would be a referral to Liverpool or Birmingham women’s hospital for trials to just ‘try and see.’ By the time my NHS appointment came through I’d already had the gazillion bloods tests recommended by Dr S and he diagnosed issues with NK cells so I cancelled it. I sometimes wonder whether it would’ve been sensible to still have the NHS option open too but that ship has sailed now so nevermind 😂

So I guess if your willing and able to pay for private tests I would but I don’t think there is any harm in waiting for the NHS testing too xx

@Hazlet2 hello :)
It is all very confusing and I was in the same position this time last year after my 3rd miscarriage and not knowing where and who to turn to, so these threads are very useful.
This is just my personal opinion having seen both Prof Q and Dr S, if finances aren't an issue then I would suggest Dr S only because of the waiting time. I think most of us on here would agree that he is an expert in recurrent miscarriages and does a lot of thorough testing (it's is expensive though 🙈)
I was diagnosed with elevated Nk cells once I become pregnant. So the initial Nk cells test was fine, however when he put them into a state of pregnancy they became elevated (that was his way of describing to me). He is also does follicle tracking scans which weren't offered to me on nhs even though I was on ovulation stimulating meds and measures the thickening of the uterine lining which I now understand is so important in conception/pregnancy - none of this is looked at by nhs. I'm not sure whether Prof Q would do these checks. She was an amazing lady and if I had to stick to nhs I would definitely have stayed under her care. Bear in mind the womb biopsy is done twice so you I'll need another 3 months after the first before she recommends any treatment. If you do choose to see her maybe make it clear you don't want to sit her trial - that's could easily take 6-9 months. Dr S starts treatment pre conception too. I wish I had the information pack that Prof Q gave me to read through but I think I threw it out once I decided to stick with Dr S as it would have confused me.
From both appts I gathered the main differences were Dr S does Nk cells tests via blood/ Prof Q by womb biopsy. Dr S prescribes steriods, Pr Q prescribes antibiotics. Dr S insists on Intralipids and Pr Q doesn't think they are necessary. Both have god success rates and genuinely want women to have babies! Dr S comes at high fees and Pr Q doesn't. Hope that helps and doesn't confuse you any further xx

I agree with @Wishing5tar I am still under my nhs consultant who has been amazing however openly told me they just don't have the funding to do extensive tests. He is actually the one who hinted about having Nk cells but couldn't say anymore then 'research and look up private consultants who test'. He did offer me a lot of testing and the karotype test too which I'm forever grateful as apparently it won't be offered anymore on nhs so if you have been offered the test definitely go ahead with it. Xx

@Hazlet2 it's so confusing, I have to say I largely pursued the Dr S route because I read the Dr Beer book and this thread.

The NHS tests similarly to yours didn't find anything for me so you then go into a pot of people who have an 'unexplained miscarriages' and that seems to be that. But then on further investigation it seems then in that unexplained category, that there are two main reasons - one chromosomal (but we had karotyping which said we were normal so it shouldn't happen every time), one immune-related so we felt it made sense to rule out the immune stuff as it's obviously a lot cheaper than IVF (it's still expensive about £2K for the tests but you can use some tests you've had before) but loads cheaper than IVF with PGS testing (where they test the embryo for chromosomal issues), which if you're having recurrent miscarriages would be the solution as traditional IVF without it would just be a very expensive way to have a miscarriage if the problem is chromosomal.

So sorry that's a bit long-winded, but that's how we got to where we are... if we were to have another miscarriage on the immune treatment, then IVF PGS would defo be our next step as I have had 5 MC and also feel that time isn't on our side. Hopefully that's helpful x

Hi @Hazlet2, deep down I always felt like there was something more to my miscarriages than “just bad luck”. I haven’t had any immune issues previously and first heard about NK cells etc from my acupuncturist. He always suspected they might be a factor for me because I am never ever sick (even when my husband went through a period of back-to-back illnesses, there was never a scratch on me). I read the Dr Beer book and it resonated, I lurked on this thread and finally I booked in with Dr S. I had my last miscarriage in Jan and I saw Dr S/had all the tests done in Feb and started his complex plan so it does feel like you can make some progress pretty quickly (I don’t feel like time is on my side either!). Wishing you lots of luck with whatever route you decide xx

Hey,
I desperately need some of your experiences :(
I suffered 1 termination of pregnancy at 14w and 3 miscarriages in the last 12 months. I am 38. I finally managed to be seen at the RMU of UCLH.
Results came back this morning: my anti-TPO (anti-thyroperoxidases) are getting higher than ever, same for the anti-cardiolipids. Definitely an antiphospholipid syndrome according to him. In addition, the anti-mullerian hormone is low, despite being very fertile.
He recommands to get pregnant again and start taking the following medications for the entire duration of the pregnancy from the day of my positive test: heparin, progesteron and aspirin daily.
IF it still doesnt work, we will move on to the IVF-PGS. But he said it will be very hard, due to my low reserve, multiple cycles of heavy stimulation will be needed to get a good number of eggs....
Would anyone have any experience and hope to share with me?

Hi @Sophfr17, I'm sorry to hear about your losses, it is such an incredibly painful journey. I don't know anything about antiphospholids but as I understand it Heparin, Clexane and Aspirin are the things to help with that. But some other ladies on here I think would be able to advise better.

But just on the lower ovarian reserve, I also have a lower ovarian reserve than I should for my age, but can get pregnant, when we were investigating IVF with PGS the clinic that we went to see suggested a milder form of IVF is better for that situation as even with the high stims you might not get all the eggs, so it is better to do low stims over a number of cycles. It is so hard this journey as there are so many conflicting opinions, but I think I would probably investigate a few different clinics and approaches for IVF rather than necessarily just taking the word of one if that is the route you pursue. Sorry you may have already done this, but just thought it was worth mentioning. Have you also had any immune testing done? As that is another avenue worth investigating. Hopefully, that is helpful x

Hi @Hazlet2. I went straight to Mr S after 3 early mcs. I was fairly young (29) and had conceived first go every time we tried (at that point!) so I didn’t think it was just bad luck/chromosome issues. My local hospital were crap and told me there was nothing wrong with me and refused to do any tests even though I’d had 3 mcs.

I googled and found this pred thread and some of the experiences really resonated with me. I have hashimotos which is an autoimmune disease (diagnosed when I was 16 and well controlled) and whilst there are no fertility issues in my wider family there are absolutely loads of other autoimmune conditions (coeliac, type 1 diabetes, rheumatoid arthritis and lots of hypothyroidism) so it felt right to me that there could be an immune element here.

I went straight to Mr S because I didn’t want to have to wait - both to see someone initially and because I think Prof Q makes you wait before trying. I’ve had one healthy baby and am pregnant now with my second with Mr S so I really believe his treatment works.

When I first went to see him my mum and DH were really sceptical because there is a lot of info out there discrediting his approach, and it’s obv expensive and we’re in a vulnerable position. It’s hard to make the decision but I’m glad I did.

Hi @Countrygirl220. Thanks for your reply :)
I thought the worst was behind me, but i feel it is actually ahead of me... and the antiphospholipid syndrome, apart from causing miscarriage, puts me at risk of strokes, meaning i will need blood thining medications my whole life. I am completely overwhelmed.
I am going to take all these treatments once i get pregnant again and see how it goes. But i wont be able to handle more than 1 extra miscarriage.
The IVF-PGS scares me a lot, he said he will be a painful process considering my situation and the results he got from my blood. I may try it once.
The NKC test is not offered at uclh. I am still sceptical about it, and the results are very controversary. But i could try too. But i can't be pregnant for this test And there are delays of course.
Obviously, time is against me, which is why we are going to try again this month, and i will get all these injections.
I am all sadness, i dont know how i will be able to handle more pain. But i will try.
xx

Welcome @hazlet2 and @Sophfr17. This group has been a lifeline for me over the last few months but sorry to hear of all the losses and heartache. We hear you

Thank you all so much for your encouraging words.

I am still digesting the news, but as you said, i knew something was wrong. And actually, the antiphospholipid syndrome appeared in my blood test only this month. Antibodies were barely positive before, only a few units. And where is it coming from? No idea. Neither for the anti-thyroperoxidases (hashimoto coming??). That is a mistery. However the discovery of the APS might be a good thing for me, cause i will be able to be treated in the long term and reduce my risk of stroke etc. I will see an hematologist soon.

I am scared about the future, but i must stay strong. This heavy treatment + or - the IVF-PGS may be my only chance to have a baby.
And i read that some women had a baby after that such procedure. So there is still hope!

This thread is amazing, feels like we are not lonely anymore... I am about to publish my story in a magazine, cause it is so helpful for women living the same tragedy! And, it can help the "society" realising that some progress must be made in this area, to treat the souls of the sad parents, and push the health system a bit more.

In French, we call ourselves "mamange", which is a contraction of "maman" (mum) and "ange" (angel).

We are all "mamanges", and we should stay strong and keep trying.

Our little angels will be proud of us :)

Wow thank you all so much for your advice 💛 it's so appreciated. I'm feeling a lot more informed - still not at a decision yet but seems as though I should just keep my nhs spot on the waiting list whether I decide to speed up things with dr S or not. I've always felt that mine weren't just bad luck either and that something has been missed. Does anyone know if I'm allowed to have private tests while waiting for an nhs referral? Is there some rule that doesn't allow you to do this?

@Sophfr17 I'm so sorry for what you're going through - it's heartbreaking. Hopefully we can all learn more here and keep each other going Xx

Thinking of you today @HoldingOn2Hope. Good luck with your appointment. X

Thank you @Crystal2020 I didn't sleep well 😑 feel more nervous than anxious! Xx

@HoldingOn2Hope good luck 💜 what time is your appointment? I hope you don’t have too long to wait xx

Hello ladies,

I've been to my appt, it's all very complicated 😑
Scan showed normal pregnancy with a heartbeat detected too measuring at 5+6 and I'm 6 weeks today so on track. A small bleed near pregnancy but he wasn't concerned.
But! Dr S also saw a gestational sac in my left ovary which explains the pain I've been having. No fetal pole in sac which he said is a positive but still a risk as he thinks it's an ectopic pregnancy too. He said it may be a cyst which I've definitely had a large cyst on left ovary before however he said he was pretty confident it was a empty sac.
Basically wants to re-scan next week and tops the usual any severe pain or bleeding then straight to A&E.
I was really anxious before the scan my heart rate was 148 so asked for the screen infront to be turned off. And then a relief when he said all is looking well and heartbeat seen. So I was ok with the screen back on until he started looking at the ovaries.
I'm okay, not much I can do. Dr S seemed confident things would be ok and congratulated me when I came back into his office to discuss results but I don't how to feel. I asked what would happen if it was definitely ectopic and he just said 'nothing we will leave it to go away and if not it will have to be removed via key hole without disturbing the normal pregnancy'
Life is so hard. Pregnancy is so hard and so overrated! That's how I feel I think!

@HoldingOn2Hope gentle congratulations 💛 it sounds like your emotions will be all over the place but at least you are armed with information and know what the pain in your side was. It’s great that they are going to keep a close eye on you and fingers crossed that if it is an empty sac, that it disappears on its own without any (or much) spotting for you 🤞🏽 Thinking of you! These things are sent to test us and your strength through all of this is amazing xx

@HoldingOn2Hope oh wow! firstly, that is such awesome news about the scan and heartbeat. I'm so pleased for you. But also so unbelievable about the second sac, I've never even heard of that before. It's so crazy in this journey isn't it, that just when you think you've figured out all the potential possible alternatives (good or bad), that there's one that you'd never of thought of in a million years. I hope you are ok? By the sounds of what you've said Dr S seems optimistic to think that it can be resolved (even if its ectopic) without disturbing the baby, so that sounds hugely encouraging! I think you properly deserve to put your feet up for the next little while! Sending you a virtual hug x

@HoldingOn2Hope sounds like a tough scan - hope you're ok. Nothing is ever smooth sailing is it! Sending positive thoughts your way xx

@Wishing5tar @Countrygirl220 Thank you. I am grateful about the scan as things measured exactly how they should, previously it's always been 'are you sure about your dates?' Or 'let's see if it progresses in 7 days' but this ectopic is on my mind. I think they call it heterotopic pregnancy - quite possibly twins but one got comfortable in the tube instead 😔
Dr S didn't seem overly concerned, he just said let's scan again in a week and earned me about when to attend A&E if I get worse symptoms. Obvs I've been talking to Dr Google and anxiety is sky high! I heard Laura the nurse telling him 'her bp is out the roof' so I tried to calm myself down otherwise I could feel myself bursting into tears.
Now I'm worried that even though I've had pains in left side i wont get them severe as the pred masks pain too?
I feel as if I've been through all the variations possible now! 1 in 5 to miscarry, 1 in 100 to have 3 consecutive mc's and now 1 in 30,000 to have heterotopic! W T actual F!!!
Deep breaths!

@HoldingOn2Hope I came on to check how you got on and was reading with baited breath! I’m so so pleased that all looking good for your dates and heartbeat & sounds like Mr S was really positive about the other sac. One thing with him is he is blunt and says it as it is so he must be confident all will be ok. What day is your scan next week? Xx

@mezgaski thank you for you words of support. He does say things as they are and he seemed confident it is a ectopic but said we will cross that bridge next week after a follow up scan which is on Friday.
The extreme bloating is also now explained as it can be a symptom and I'm really bloated.
I had a very painful cyst in my last pregnancy (last may) very similar symptoms painful groin, however on scan it was a cyst from the corpus leteum and was quite large at 2cm. I mentioned this to Dr S today and he said he hopes it may be that but what he saw looks more like a sac. Dr Jan was in the scan too and 2 nurses they all seemed to agree with Dr S too.

@HoldingOn2Hope so good to hear from you. You must be absolutely exhausted after all that. I hope you are looking after yourself this evening. Delighted to hear about the heartbeat! And re.the other sac, like @mezgaski said, I think Dr S is pretty direct so he would have been very honest with you today and you can take reassurance from that. Did your OH go in with you? X